Simon’s story: Migraines, misery, and the medicine that moved me forward

Can you tell me a bit more about being a musician and music teacher who suffers from migraines? I imagine that is quite a tough challenge...

It is.

I’m 54 years old now, but I first went to a doctor about my migraines when I was in my early 20s. 

I’m from Northern Ireland, it’s quite a conservative society: even more so back in those days, when migraines were not really an accepted or fully understood health issue. I certainly felt a bit of a stigma about going to the doctor for a migraine, because it was seen as just a headache - I was essentially told to just take some paracetamol and stop complaining.

But I was getting them regularly, and not just your run-of-the-mill headaches. These were extremely painful.

I remember being told things like, "Well, it's because you're playing loud music all the time" and, "It’s because you’re going out until three o'clock in the morning in smoky bars, and you're drinking too much". There was no treatment available apart from taking a couple of paracetamol and a “you’ll be fine”.

So during my 20s, it was seen as just getting bad headaches. But for me, it meant I couldn’t go out and play the gig I was supposed to do, I was locked in my room with the blinds down and an eye mask on. I struggle terribly with light sensitivity whenever I get a bad migraine.

It took a long time to find any real help.

Did your experience with migraines change much over the years?

It did, yeah.

In my 30s, I went back to a doctor. At that point, you started to see things in pharmacies that said “migraine treatments.” I was aware of the term migraines, but I guess maybe it’s part of the Northern Irish culture, in that you're not supposed to be sick, you're just supposed to get on with it.

I went back to the doctor, and I tried those over-the-counter things, but the term migraine had started to become a little bit more common. 

Actually, from my mid-30s until my late 40s, the migraines eased off, at least somewhat. I didn't get them nearly as often, but they never stopped affecting me totally.

I was still working in loud environments and late at night as a DJ for a lot of that time, but the smoking ban had come into effect, and I guess that maybe having my DJ headphones might have helped slightly - but I'm not sure exactly why the migraines did calm down on and off during that 15 or so years.

Did you ever explore cannabis before getting a prescription?

I’ve been culturally exposed to cannabis since my later teenage years. Growing up in Northern Ireland as a musician, it’s part and parcel of the culture in certain elements.

It was actually in my late 40s that I started to reflect and thought, "You know what, there were certain times during my life when I didn’t get the migraines at all, or they were much less invasive". Now I’ve noticed, that's when I was using cannabis. 

Part of my recreational cannabis use was, if I felt the headache coming on, I’d just go and use cannabis and that would actually help make me feel better. So, while I did use cannabis to help ease the impact of my migraines, I had also used it recreationally from my late teenage years.

I was always against the heavy stigma placed on cannabis users, and the way that it was treated by the law, and in society. There was a lot of stigma attached to self-medicating, people immediately thought ‘that’s just an excuse, you’re using it to get wasted’. 

I'm not saying that I don't understand that line of thinking, or where it comes from: weed was so heavily demonised, and so much misinformation was spread about it when I was younger, that you can't blame people for thinking that.

But as I matured, I began to really understand the therapeutic potential it was offering me.

Do you think there is a difference between recreational cannabis and what you’ve been prescribed by Releaf?

100%. 

You’ve no idea what you’re buying on the black market, which is a massive issue.

I have definitely found that the medical cannabis I have been prescribed - I don’t know if it’s just the way it’s grown, or if it’s just the way cannabis cultivation has developed over time - but the fact that they can moderate the amount of THC means I have a cultivar that does not make me feel 'high'. It’s not like I just kick back, open a bag of crisps and start watching cartoons.

I am able to live the life that has, at regular intervals, escaped me for more than three decades. 

I'm not here to judge people who enjoy cannabis recreationally, but that is not what I am getting from my prescribed treatment. The fact that I can access something now that doesn’t make me feel like, "Oh God, now I just have to go and eat chocolate", that’s very important for me.

I think it’s important that people can access information about the actual reality of medical cannabis. Part of the destigmatisation is that it’s not that you’re taking drugs in any different way than when you take two paracetamol, except it's more natural. 

Have you tried any of the conventional pharmaceutical treatment options for migraines, and if so, did they help?

Yes, a couple of years back, I finally went to a GP. I thought that surely, in the intervening 20 years since I’d been to a doctor, treatments have progressed. And they had. 

There are an awful lot more drugs that a GP can offer you, but I find the side effects almost unbearably heavy.

I was prescribed a class of drugs called triptans - they change how blood circulates in your brain and how your brain processes pain signals. When I was first prescribed them, the doctor did warn me that they said it can make you feel a bit sick and very drowsy.

I was supposed to build up the dose, but the triptan I was prescribed just wiped me out. I took it for about two weeks, and I got to the point where I could barely get myself together to work. I do a lot of teaching online from my home studio, but there were days when I couldn’t even drag myself into my home studio.

And, on top of the tablets I was prescribed to help with the pain, I also needed to then take a whole list of things to stop the sickness and drowsiness. 

And I just feel like that’s a slippery slope… you’ve got that little pill box with every day marked out, you’ve got six different tablets to take, and it’s all because one makes you feel terrible and another counteracts it.

When did you first consider trying legal medical cannabis treatment?

I stopped using cannabis in my mid-30s. I would occasionally dip in and out of it, but for the most part, I wasn't using cannabis regularly. Then a few years ago, I started to reflect on times in my life when the migraines were not so bad and thought, "Wait a minute, the times that I had fewer migraines - was that during the times that I was using high quality cannabis before I was ever prescribed it?"

I was already aware of medical cannabis legalisation in the USA and other countries. Then, I guess about three years ago, I started to notice medical cannabis being advertised in the UK.

I first approached another private UK medical cannabis clinic, but I was told that I didn't have enough documented medical history at that point to be eligible for a medical cannabis prescription. So I went back to my GP and started another round of pharmaceutical treatment options, because here in the UK, you need to have tried at least two different conventional treatment options before being considered for medical cannabis treatment.

So there I was, being prescribed another heavy painkiller that I didn't want to take and knew what the side effects were going to do to me.  They worked to a certain extent with numbing the pain, but they worked by knocking me out, or making me feeling even more sick.

That's when I approached Releaf.

It’s taken a little while, trying a few different flower and oil options, but I am really happy with the options I have now been prescribed.

How do your prescribed cannabis products work for you?

I was a cigarette smoker, but I thankfully quit eight years ago, so I really didn’t want to have to smoke anything, let alone my medication. But during my initial consultation, the doctor explained how the dry herb vaporiser works, and with the Releaf vaporiser I immediately found that (with one of the strains to start off with) it was really helpful when I felt the migraine coming on.

To begin with, there was nothing that was working well as a preventative option. I tried the oil, but I didn’t really find that the oil was that helpful, although in my last follow-up appointment the doctor told me that there are now some new oil options available, so I may try another. 

The doctor also suggested a particular strain that they’ve had feedback on regarding migraine prevention in other patients. Since starting that one about three months ago, I’ve had a couple of weeks when I’ve had no migraines at all, and when I have had them, they’ve been much less severe.

So, after a little trial and error (which the doctor explained was very normal when starting medical cannabis treatment) I have now been prescribed two different cultivars that I find work very well for my health needs. One for when the migraines hit, and the other as more of a preventative treatment option.

One of them is something I can use during the day, and most of the time I feel like it’s pretty good preventative stuff. If I feel one coming on, there’s another one that’s a bit heavier that I can then take. In those situations, I still do have to go in bed and close the curtains to help with the heavy light sensitivity, but it helps so much more than the pharmaceutical options I was previously prescribed - and I don’t feel like I’m completely wiped out like I did when I was taking the really heavy painkillers.

I do have to say that the ‘lighter one’, the daytime flower option, I find it helps me focus. It lifts my mood. I can have one of those and I can still do my job. I actually feel sometimes like it helps me do my job, because I’m not getting 'high'.

I’m not sitting there giggling and eating crisps, you know, because I’m on a very low dose. So I’m taking a very minimal dose, just to take the edge off that throbbing head.

I can now say, in all honesty, that the treatment options I have been prescribed by Releaf have been the most effective migraine management tools I have ever tried.

What did a typical week look like before you started treatment with Releaf?

A year ago, my typical week looked pretty different to how it does now.

I would usually have a few days when I would have no migraines, but at least once a week, I’d wake up with a dull ache - a sore head, and some pressure behind my eyes. I’d take a couple of Nurofen in the morning, and sometimes they’d help (but not always), at least for a while. But as the day wore on, that familiar throbbing would creep back. I’d take another few over-the-counter painkillers (I had stopped with the tripans at that point due to the side effects) and eventually call it a day. More often than not, I’d have to cancel my plans and head to bed early.

All the long-term students that I teach music to know that I suffer from bad migraines, but the migraines were so bad that there was just no way that I could make it through my full work week. I would have to cancel at least a few lessons each week, and being totally self-employed, I would lose income every time I had to cancel.

Two years ago, when I was having an awful period, there were maybe three days in a week when I was just down with the worst pain, and even on the days that I didn’t have a headache, I would feel so washed out that I knew I wasn't giving my students my best.

That was a hard pill to swallow. I take great pride in my work, so letting people down wasn't something I enjoyed. I work with a lot of kids, so bringing a certain level of energy, enthusiasm, and fun to the lesson is very important - but I just wasn’t able to do that some days.

I found that really frustrating.

And how has that changed since you began medical cannabis treatment?

Right now, in an average week, I usually have no days like that. Most days I feel great.

If I wake up with a slightly sore head, then I will grab my vaporiser and take a small dose of the daytime flower option I have been prescribed. That not only completely removes the headache, but it also just make me feel... nicer, better, lighter, more energetic, and more focused. I can get through work, and offer my students my best self.

Sure, sometimes at the end of the day, I can feel a bit groggy, but unlike the pharmaceutical options, that doesn't last. I don't wake up the next day feeling washed out from the migraine like I used to, or groggy from the heavy painkillers I was taking.

When I take my medical cannabis, I don’t experience any of the typical side effects that I used to with the painkillers (like nausea or that overwhelming drowsy sensation). With some migraine treatments, it can feel like you’ve been completely drugged, leaving you with a heavy hangover the next day. That is not the case at all with the medical cannabis cultivars I’ve been prescribed, there’s no ‘hangover’ at all - it’s a much cleaner, more manageable experience.

If I feel one coming on in the evening, I can grab my vape and medicate with the evening flower option, and it just works. I can go into bed, I can read a book for a while. If it’s really bad, then yes, I still have to draw the blinds, make sure the room’s dark, and put an eye mask on.

I want to be clear - medical cannabis has not cured my migraines. 

I do still have migraines, but with my new treatment option, if I feel one coming on, I know that I will almost always be able to stop it before it gets severe, and that the migraine and the treatment option won't leave me with that horrible fuzzy hangover feeling the next day.

Has your treatment with Releaf felt responsive and supportive?

Very much so.

I subscribe to the Releaf+ plan, so I can get a consultation whenever I feel like I need one. To start with, I couldn’t even get the first prescription renewed without a follow consultation, which I think is a wonderful idea. I think that extra level of support and oversight helps with my overall treatment experience.

I’ve found it easy to book every consultation so far: I’m always able to get one, sometimes the same day, sometimes the next day - but certainly within a couple of days of opening up the computer and looking to book my next appointment.

The staff and the doctors are always very friendly, super helpful, and actively listening to what I'm saying. I certainly feel like the clinical team members I’ve spoken to are extremely knowledgeable about both conventional and medical cannabis treatment options.

I really appreciate how open and honest all the specialists and nurses I have spoken with have been. They have never once tried to hide that finding the right medical cannabis treatment options can be a bit of an ongoing process.

They explained that Releaf patients have access to the new options that are being added to the formulary. So although I’ve got something right now that is working great for me, that doesn’t mean that in the future something else might become available that could be even more helpful, or that if I start to feel like anything I’m currently prescribed isn’t working as well any more, I’m always welcome to come back and discuss that.

So yes, I have been almost a little surprised at how great the overall process with Releaf has been. It's very patient-centred. Everybody’s actively listening to my feedback and the way it’s working for me.

Apart from helping you with your migraines, has medical cannabis had any impact on your overall health and well-being?

Definitely. I have gone from having some fairly low points and struggling to get through the week, then getting to the weekend and thinking, "Thank God, if I have a headache on Saturday at least I’m not losing money, at least I’m not cancelling work" – to generally feeling quite positive. Much more optimistic.

I would also like to emphasise, that for me personally, I think the mood-enhancing elements of my medical cannabis treatment shouldn't be ignored, and I think there’s nothing wrong with that.

It makes me feel good, it really does help me if I am feeling down. I know that there’s still a certain level of stigma attached to that, but I also know that medical cannabis is being prescribed to patients for mental health issues, so it is a little backwards that it's still seen as "taboo" in some ways.

I don't think that anyone can deny that whether we are battling mental health concerns or not, as humans, we need a lift in our mood sometimes. It helps me be better in work. Certainly in terms of if I have to be energetic and enthusiastic and excited and all that kind of stuff... if I’m feeling low and my head’s sore, that’s impossible.

So it has helped massively - not just with migraines, but it’s helped me live a much fuller life, I believe it’s boosted my quality of life.

How do people respond when you talk about your treatment?

Generally, it has been very positive.

I had a conversation six months ago with a policeman, and he’s very much aware of medical cannabis. He openly said to me "We should not be chasing after cannabis users".

But in terms of the average people out there –  I’ve spoken to people from all walks of life, people who have absolutely no previous cultural awareness of it, and most of them still don't even know that medical cannabis is legal here in the UK, let alone how many different health issues it can potentially help treat. But again, the response has been overwhelmingly positive.

I have a friend at home whose mum started on medical cannabis, I think about three or four years ago. Up until that point, she would have been the kind of person who would've just said, "Are you joking? That’s illegal drugs!".

She has fibromyalgia, and she had a tumour removed a wee while back, but she battles heavy chronic pain. Medical cannabis treatment has been nothing short of life-changing for her. She’s gone from being that little old lady in the street who would be shocked at the mention of cannabis, to now being someone who is taking medical cannabis daily, and living a much more comfortable and enjoyable life - now she’d be a complete medical cannabis advocate.

So I think that’s really important - the UK waking up to the fact that this should be separated from the heavy narcotics it has been lumped in with for far too long. It has true medical benefits - there’s a scientifically provable medical outcome for people, and that research is only going to keep growing.

Where would you like to see medical cannabis in the UK headed in the future?

I would love for it to become more accessible and widely accepted. Let’s face it, in our society, we are throwing heavy pharmaceutical drugs at people for all kinds of health issues.

I feel like at this point in the UK, we are at a pretty crucial tipping point. Anything that can help destigmatise cannabis use is great in my eyes. There are still people out there who hear the word cannabis and just think of illegal drugs: I think it’s time society moved on from that.

So if there’s anything I can do to help push that along - great. This way of doing things, where cannabis becomes medicalised, seems to me to be a much better approach than just trying to convince people that 'weed' is safe and has medical benefits with zero legality.

It’s not a cure-all, it's not a magic bullet, but it has been amazing for me - and reading through the rest of the patient stories on the Releaf website, I can see that it has also been life-changing for so many others.

So yes, I guess if anybody asked me where I wanted to see this going, I would hope that the stigma and misinformation starts to disappear, and that it could get to the point where access is easier for the patients who can benefit from medical cannabis treatment. 

It's not about getting high, or being lazy - for me, and so many others, it's about finding relief and improving our quality of life. So the more information that people can get about that, and hopefully the more stories like this about regular folks, then we can break that barrier down.

For more information about medical cannabis treatments for this condition, please see medical cannabis for migraine.